Monday, 1 July 2013

Don't be alarmed... I know two blogs in as many weeks is a bit of shocker.

The live-in carer situation is working well, although due to the lack of progress finding a replacement 2nd carer, Kadvi, the 1st carer is doing 3 week shifts at the moment so is probably getting sick of the sight of me. Although bedtimes are no later because of the necessity for a double up carer, the daytime is much more flexible and during the last week I have gone out almost every day. It's only been local but it's a very welcome change. Kadvi has been very flexible with her break times and has combined outings with her running, so it's working well. I just hope she stays a while.

I tested a new eyegaze system recently, not primarily for me but for a friend who is considering buying one. Saying that, I wouldn't say no to a nice new eyegaze system. My current system is completely familiar to me and I know it's faults and have the necessary work arounds. But it IS starting to creak after almost 4 years constant use, and I am increasingly concerned with being left high by it failing. In an ideal world I would have this as a backup system and get a new system with all the new features.

Our cruise is getting nearer and I am starting to look forward to it now the carer has been sorted. Also I just discovered my standing hoist fits in the car so I can it on cruise. It will make transfers much quicker and easier, and more importantly it will allow me to maintain leg strength.

About Me

OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good.
I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do!
For those of you who really want to, you can check out my "status" on my web link.
Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!